Scared to Death - Input PLEASE

[Cheers]

I have recently written our story. I am hoping others here can read it and watch the posted video of my daughter's eye tic. ANY input would be more appreciated than you can know.

 

http://heatherrayne.wordpress.com/2012/02/07/le-roy-students-pandas-and-our-experience/

 

She was sick again this week (about 2 months after the 1st episode ended) and I have noticed a few "eye rolls" again today. I thought we were in the clear. I am so scared and nervous and worried for her.

 

Further info - she has no other symptoms. She does great in school and socially. She has always displayed some VERY minor neurotic behavior - such as list making and having to do things a certain way or she will get upset (but not to the point of tantrums or rages). She organizes things her certain way...stuff like that - nothing life altering. Other than that - pretty darn typical.

 

Thank you for your time!!!

[Chemar]

hi and welcome

sorry it took a while for your post to show due to our new anti-spam filters

hope you find the help you need here

 

maybe also consider posting on our TS/tics forum as well http://www.latitudes.org/forums/index.php?&showforum=1

[blakes_mom]

My son has very similiar eye tics, ( eye roll and winking, blinking tics. It also sounds like your daughter has some OCD symptoms. This looks like PANDAS to me which is what my son was diagnosed with. It is possible that your daughter had strep again without any symptoms. My son does not get a fever or sorethroat with strep. My best advice is to find the nearest PANDAS doctor in your area. I would also consider antibiotics to prevent future strep episodes once you get this flare up controlled. A tonsillectomy has also been recommended for my son.

[Kiera]

Highly suspicious for Pandas given that it started following a strep throat! Did things improve following the 2nd dose of antibiotics?? I would also advise going to the nearest Pandas Dr to be fully evaluated just in case it doesn't improve and new symptoms start. In the mean time, keep researching and reading here as you'll get a wealth of info here. (don't be scared off by some of the more severe cases posting here, there is a wide range of symptomatology) and good luck!

[colleendonny]

I think it sounds like PANDAS as well. I recommend looking for a PANDAS specialist in your area. You can go under the pinned threads to look for doctors who have helped. What state do you live in?

[trggirl]

I would definitely be suspicious of PANDAS. My daughter's PANDAS started with shoulder shrugging and some eye rolling after a strep infection. Because this is her your daughter's second time, I would try to track down a PANDAS friendly doctor in your area. I'm sure if you post your state, someone will chime in with some help. Welcome!

[Cheers]

Thank you all. We live in SE Wisconsin. I haven't really found too many Docs around here (been reading this and various sites for quite some time now). But someone I know has a son who was Dx by a pediatric neurologist in Milwaukee. So, at least I know there is a doc around who believes in PANDAS! I wrote a letter to our primary family doc (who I have had for 20 years now) and also printed a letter I found on here (written for medical professionals whom are unaware of PANDAS). I am sending that to her today.

 

That first episode, she got better very gradually after a 2nd round of antibiotics. I think having lost her ipod (she plays games on it) may have made a difference as well...not sure. But now my DH bought her a new one (grrrr).

 

This morning, I noticed nothing. And last night, only 3 individual eye rolls. I am REALLY hoping this won't turn into a full episode.

 

I did write to her teacher and explain everything and she said she would pay more attention and let me know when/if she notices. She said she has noticed in the past. I was not happy to hear that, obviously.

 

I did go ahead and order her the Kids Calm Multi which has the same magnesium in it as the Natural Calm (I called them to make sure). I actually take it myself for palpitations (PVCS/PACS). And regardless, her eating is so picky, she could certainly use the nutrients anyway.

 

I have a history of anxiety myself and when this started in October, I had a complete relapse. This has really overwhelmed me. And when I saw yesterday that it could be coming back...it broke my heart. My family thinks I am over reacting...that she will get over it.

 

Anyway, thank you so very much. As far as posting in the Tics forum - am I allowed to post this same entry?

[trggirl]

Be cautious on the Kids Calm multi. Fish oil and omegas can be a trigger for tics. Also the D vitamins. Some kids on this forum do great with omegas and D's and some have bad reactions. If you do a search on this forum and the tourettes forum, you will get a lot of info. In our case, my daughter has a very strong increase in tics with these supplements even though her blood shows she is low.

[patric]

Hi.

There is a very knowledgeable pandas doc in hinsdale IL which is outside Chicago and probably only a couple of hours drive for you ( some people travel much farther).

His name is Dr. Kovacevic and I believe his website is web pediatrics.com.

I am not sure about any PANDAS docs in Wisconsin. Maybe someone else will chime in.

I also agree with kiera. Don't be scared of severe cases and there is lots of hope and treatment options.

Best of luck!

[dschneider]

Hi,

 

Although I read the forum daily, I seldom post, but your post has prompted me to do so. I found this board in December 2009 after my son had a sudden onset of eye-rolling and mouth drooping. Then a slow build up of other symptoms such as separation anxiety, chorea movements in his hands. When the onset of eye-rolling occurred we went to the emergency room where I was told it was a transient tic. Then a trip to the pediatrician where I was given the same opinion. Approximately 3 weeks after the occurrence, on a Friday night he complained of a sore throat and I could see red spots at the back of his mouth. I took him to a walk-in clinic the following day, but the spots were gone and they thought he was "fine".

 

My constant research led me to this site and I immediately called the pediatrician to have him tested for strep. This was almost 30 days after the sudden onset of eye-rolling. By this time other symptoms had arisen. Although asymptomatic for strep he tested positive. The pediatrician was not concerned it was PANDAS, but at my insistence, did prescribe Augmentin vs. her preferred Amoxicillan. His symptoms improved greatly within 3 days. The eye-rolling became minimized. I was fortunate to get an appointment with Dr. Murphy is St. Petersburg, FL and the pediatrician (begrudgingly)agreed to keep my son on Augmentin until that appointment.

 

My son had the flu mist H1N1 shot in November 2009 and was exposed to strep the following day and the consensus is that the combination caused his PANDAS outbreak. (There will be no more flu vacs and I may balk at any other vaccinations, as well.) Since then he has not had strep, but did have several outbreaks for 16 months. Frequently we knew it was because he had been exposed to strep. Some of the outbreaks were mild and some more severe and he was kept on Augmentin for most of the time.

 

In September of 2011 he got off the bus and commented his eyes were doing that "funny" thing again. A few months had passed since any major symptoms, and as it turned out his classmate, who sits next to him had strep. My son did not test positive for strep and the eye-roll was minor and short lived. He has not had an antibiotic in a year.

 

I am not telling the story with the emotion that I should, but I know that each parent here has, or is, living the fear of a sick child and there was a 12-month period when I could not pry my eyes off him, that I could not love him enough as I waited to see what each day would bring. I do not know what the future holds, but I am ever grateful to all of the knowledgeable parents on this forum who are here to share information and give comfort to each other. Is my son "cured" or in "remission"? I do not know, but I am prepared to battle PANDAS if and when the symptoms strike again. Dr. Murphy's office stated my son has the mildest/or one of the mildest cases they have seen and I often wonder if the outcome would be different if I had not found this board and the courage to battle a pediatrician who was not totally on board. A poster at this forum recommended a pediatrician that my son now sees and I am comfortable I am surrounded with people who will take care of him, if needed.

 

Your post prompted me to write this update. I keep each child that is written about on this forum in my thoughts and prayers and have great admiration for all of the parents here. And, again, I am so grateful for the knowledge you share.

 

-Donna

[Cheers]

Thank you all so much for your input.

 

I just returned from helping out in her class today for their V Day party. The teacher told me that she did notice her do it a few times today. I haven't seen it yet. I think it may happen more when she is stressed or concentrating. She said she will let me know if she notices any increases or changes.

 

I am of course willing to find a PANDAS friendly doc. I first want to see what our physician says after reading the material I gave to her. She is usually very compassionate and receptive. I hope that is the case this time. Do you think I should ask her for Augmenten for this latest possible exposure? Will it matter if the virus has already passed??

 

For those who take daily antibiotics, what are the side effects and downsides to that?

 

My friend whose son was diagnosed with PANDAS, his doctor said no to daily ABs because his tics were minor and transient and that the benefits didn't outweigh the risks. I am curious what those risks are. He also has autism and is non-verbal so not sure if that makes a difference. The mother said she actually sees this as a positive thing kinda because it lets her know when he is sick since he cannot tell her. So that may be another reason for the no ABs.

 

Is it possible that this will be the worst of it - that it won't progress or get worse? Is it possible she will grow out of this??

 

I wish I could stop worrying so much. My head is spinning.

[Kiera]

A few answers to your questions

1) Great that you have a ped open to new info, however, when it comes to pandas, problem is they don't know how to treat and don't know latest research info. They'll probably go to NIMH website which still has outdated info on there (they're doing clinical trials right now so it can be updated at some point)

2)Still necessary to treat even though exposure has passed as it's the circulating antibodies that are causing the problem now, not the original infection (antibiotics help with this due to immune modulating effect)

3)Side effects of antibiotics are generally GI problems, this can be counteracted by using a good probiotic. Also, when they talk about drug resistence with overuse of antibiotics, they usually mean a people as a whole, not just one child, eg if the whole population went on permanent antibiotics over time, we as a race would eventually develop drug resistence, but you got to weigh the risks/benifits on an individual basis. If your child is resistent to one, there are many others to try. Also if your child has a mild case as like dschneider's case, then maybe just a longer than usual dose is needed per infection but not continuously. Rheumatic fever has a precedent for long term antibiotics with no ill effects.

4)Is it possible to grw out of it? Jury still out on that, many theories, when thymus gland shrinks in teenage years some can resolve, but at least seems to get more managable with age, esp. with treatment

5)Is this the worst of it? Impossible to say, each kid's course is so variable. I'd be surprised if it went completely away on it's own, never to return. But it may just stay at the current level of mild OCD and transient tics. Look up the full list of pandas symptoms to make sure there aren't other symptoms that could be attributed to pandas.

6)My gut feeling would be to agree with dschneider and start a prophylactic dose of antibiotic (after seeing a pandas specialist). That way you're minimizing the problem from the get-go and keeping it under control. Dr K in Chicago has been at this a LONG time and is an excellent choice for an opinion. I have to fly to see him!

7) Don't worry! Your daughter's symptoms are mild and you're on the right track if things get worse at a later point in time, you won't be wasting years trying to figure out what's wrong! There's lots of hope!

[Cheers]

Thank you again!!

 

This is the info I sent to my Dr - http://ocfoundation.org/EO_PANDAS.aspx

 

I can say that my daughter does have the following:

 

Challenges with eating - just extremely picky. But she does eat and isn't allowed a bunch of junk food.

 

She does have sensitivity to clothing. If there is a bump in her sock, she will be VERY bothered by it. There are certain fabrics she hates (such as flannel). But they don't make her freak out or anything. She reacts to it like a nails on the chalkboard kind of way.

 

And then she has the little quirks I mentioned above with the organizing and list writing. But when she is unable to do this, again, she doesn't freak out...will just complain a bit. Honestly, I have always had my neurotic ways so I figured she just "got" those tendencies from me. I guess perhaps there is more to it??

 

Other than that she doesnt (knocking on wood) display any behavior issues whatsoever. Her grades are great. No anxiety or deteriorations.

 

Also when I was in 2nd grade I had an episode which was never diagnosed. I lost control of all my facial muscles basically. It started with eye shifting and then my head would turn to the side without my control. Also, my tongue stuck out and I couldnt keep it in my mouth. It was very traumatic, but only last a single day. That night, I threw up and was suddenly better. They did EEGs and everything and my mom never found out what was wrong. Not sure if any of that is meaningful.

 

If I were to ask for an AB tomorrow, should I request Augmenten?

[Kiera]

Augmentin is a good one but is severe on the stomach, needs to be taken with food and pills are huge and don't taste good. Ped might not want to start with this though as it's a combo drug, he might want something less potent, keflex is good, but there are many and sometimes it's trial and error. Also, FYI, you may already know but PANS is the new proposed name for Pandas as not just strep can trigger exacerbations - virus's, mycoplasma (walking pneumonia), lyme, etc. PANS stands for Pediatric, Acute onset, Neuropsychiatric Syndrome!

[Cheers]

I worry that she won't test positive now and that the doc will only prescribe if positive. Then what should I do??